Category Archives: Riding Out a Relapse

MS: I’m so over it!

I’ve often returned to blogs to find that there are no new posts for long stretches of time and I find myself wondering… what happened? Where are they?

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I don’t want to sound too final but, that’s kinda why I’m signing off, and explaining. Yes sir re… I’m over it. For two years I’ve used my blog to keep my cognitive skills sharp (ironic, since it’s my MS that causes me to have cognitive issues in the first place). I know as much as I need to know about this disease, probably too much, and I’m walking away.

I’ve always found it healthier to keep my distance…stay away. I realized and accepted many years ago that it is going to do whatever, whenever it wants. I have been blessed with Relapsing Remitting MS. I have been very aggressive about the disease modifying drugs, diet and lifestyle choices. Each of these I believe are the reasons for my good fortune. I have slowly recovered (and sometimes quickly) from each of my relapses without the use of steroids. Please… don’t get me wrong, sacrifices were made. If I had continued to work, this would not have been the case, not even close. It would have been necessary with many of my relapses to use the steroids to recover more quickly. By not working, my lifestyle changed. My body gets what it needs; time to recover, rest, and reduced stress.

The sacrifices are more my husband’s than mine. As the person with the illness, I expect to suffer. I cannot walk away. It follows me. He has a choice, always.

Here is where I want to tell him:

“Thank you”

Spoken Word Video

Title of poem: “A river for Kevin”

Venue: Busboys and Poets, Hyattsville, Maryland

The MC for the night, E-Baby Poems was awesome! Did you see him come back to me when he saw that I was nervous XOXOX

 

My new blogging interest is…marriage. I want to encourage others to “Get married. Stay Married, and Be Happy”. So please, check back from time to time to see how I’m moving along with it.

 Comments: I always look forward to reading them and responding.

 Take care!!

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MS…I’m so over it!

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Filed under Ilness and The Arts, Long Loving Marriages, Riding Out a Relapse

I auditioned for a MUSICAL and I KILLED IT!

Can I sing? HELL NO! but my renewed outlook on life went back to…fuck it! I can do anything that I want to!

Performing a Vday Monologue 2010, Artsquest, Bethlehem, PA

I did it like JAMES BROWN

I want to say “Thank You” from the bottom of my heart to Eleanor and Wil, Sharon, Paula and Dawn, for my day out on the boat. From Sharon driving to pick me up, to Dawn fixing my plate, to Eleanor serving tofu and grass feed beef, to Paula making me read poetry and think of Gwyn Michael.  Big thanks to Ryan Hulvat for being the REASON that I met each of the aforementioned people. I love you guys madly. (All my photography family)

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It’s hard to explain all of the ways in which that day was good for me, maybe even impossible. But, here’s an example: The following week I auditioned for a musical in Quakertown, PA. Can I sing? HELL NO! but my renewed outlook on life went back to…fuck it! I can do anything that I want to! I eagerly raised my hand to “sing” first and I did it like JAMES BROWN! I held nothing  back.  They paused and said…hmmmm:/ Can you read this script for us? Are you kidding me…I can read the hell out of anything you give me. Soooo, what are you saying…you don’t like my vocals:/??

I landed the only non musical part in the musical!! I KILLED it (LOL)

Point is: I’m now driving to Quakertown for rehearsal, meeting and engaging some really cool people. Feeling confident about what I have to offer and enjoying every ounce of it.

And last, but not least…thank you to Gwyn Michael R.I.P. for showing me how to live without the limits of others. My Warrior Sister! May you continue to look down on us, and smile 🙂

How have others motivated you to “get back out there”?

Do you have any suggestions for a person who finds themselves self-isolating, that would initiate change? Everyone always suggest volunteering in some way but, I want something different.

I find that if I have a reason to go…I am more likely to go. I’ve thought of starting a book-club at the local Cafe. What else would you suggest?

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Filed under Riding Out a Relapse, Uncategorized

MS: De-stress strategies when you are a TEN

My stress level this morning on a scale of one to ten, was a TEN!
I’m happy to say that I knocked it out of the park! I can’t control how much stress comes my way but, I can control how I respond.Black-woman-meditating1 Do I internalize it, or not? Honestly, in some cases, stress does break through. Usually family stuff, but even that is better controlled with strategies. But work? I don’t think so!
So, what did I do after a horrible morning? When asked to stay extra time (because it would look good to my employer) I said yes, then gave it a second thought, and said, no. I recognized that I was already a TEN and knew that going home to decompress would be smarter. I then drove home, sat in the garage and talked to my husband (who was at work) for 10 minutes about my morning. Talk therapy and support. I eventually came inside the house, and now this…writing.journal50019628_n I had actually written this in my head, while sitting in the car decompressing. Once this is written I’ll do 30 minutes of Mindfulness Meditation, eat lunch, take a nap and head back to work, making sure to stop for a frappaccino on the way.

COMMENTS: What would bring you down from a TEN?

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Filed under Mental Well-Being, Mind-Body Connection, Riding Out a Relapse, Stress Management

Van Gogh sucked too!

Anyone great at anything probably “sucked” at first. Take Vincent Van Gogh, he only sold one painting before he died.van-gogh-starry-nights-1There’s Michael Jordan, Bill Gates, Oprah Winfrey,  Jay Z and…me:) Have faith in yourself if no one else does.

When I took my first Biology class in college, I got an “F”. It never occurred to me to change my major. I don’t even remember thinking there was anything wrong:/ Not with me anyway. As an elementary school substitute teacher, I told a class that they had, “really pissed me off”. How was I supposed to know that wasn’t okay to say? They HAD! The principal let me in on a secret, “you can’t DO THAT!”. That’s when parents call. I found other ways to say LOTS of things. Now, I kinda suck at learning the complete map of Easton so I can deliver these kids safely home on the school bus. I’m working on it. I’m gonna try looking at it as another human body system, like the muscular system or the respiratory system. I’ll think of it in terms of something that I’m more comfortable with…not a MAP. I’ll be sure though not to tell the rowdy little buggers on board, to sit down and be quiet…you’ve pissed me off. I’ll say, ” I’m concerned about your safety, you should sit down, cuz if we crash…you’re gonna DIE!” Better?

Comments: What have you gotten better at over time, and you were terrible in the beginning?

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MS : Re-entering the Atmosphere!

Re-entering the work-force is like re-entering the atmosphere, and I’m going in like Sandra Bullock in the movie “Gravity”

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“Gravity” Movie Trailer

It’s violent and unstable; her shuttle burns up and falls apart all around her. She’s not sure if she’s gonna make it, but, her only choice is… Well, it IS a movie, but that pretty much sums it up.

Back in my real world, I’ve got a JOB! I haven’t been this excited about having a job since I was sixteen and one day. That’s when I began stalking the manager of our local grocery store, “Big Bear”. He made the mistake of telling me that I’d have to be 16, and I WAS.

I can’t finish this post now, or do anything else because, I have a job:) That means its 5 minutes til 8 and I have to go to bed at 8. Why, because I need to be up at 4 to practice mindfulness meditation for 30 minutes, stretch (with a teeny bit of yoga) , dress, have a muffin with tea, take my Tecfidera and Ampyra, leave the house at 6. Work til 9, am home by 9:30, big breakfast at 10 and sleep at 11. Wake at 12,  groggy til 1, leave for work again at 1:30. Work til 4, gym by 4:30, exercise bike for 30 minutes, leave by 5:30, home by 6, dinner at 7, take Tecfidera and Ampyra, shower and bed by 8.

BOY, I want to finish this, but I can’t. I’ve got SO much more to tell you :)Like: Why now? What have my doctors said? How much have I revealed about my MS?

Please come back soon:)

COMMENTS: What do you think my job is?

Hints: Must leave the house and be physical (no stay at home-computer work), must engage people, love kids, must require few hours(part-time), relatively low stress.

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Filed under MS Drugs, Riding Out a Relapse, Stress Management

MS: White Sangrias, Girlfriend’s and Great Conversation

How could something so outside of my comfort zone, bring me so much comfort?

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First, I drove 4 hours to Germantown, Maryland…BY MYSELF, to visit my BFF. It was just what the doctor ordered. She sent out a social media message and ten…yep TEN girlfriends (Soror’s) met us at Rosa Mexicano, a really nice Mexican Restaurant in the The National Harbor, Fort Washington, MD. I wouldn’t let her send the message early because too many times I’ve wanted to gather and then at the last minute, couldn’t make it. All the moon’s had to be aligned.

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We drank White Sangrias, ate dinner and talked for hours. How could something so outside of my comfort zone, be so comforting?

I’ve known these women for at EAST 30 years and some even longer! We were all “girls” together, and I am so proud that we’ve grown into such an amazing group of woman. They each caught me up on what’s been going on in their lives, jobs, kids, school, races they’ve run, races they plan to run, trips taken, trips planned, and changes they want to make in the world.

What I enjoyed most was, not talking about me, being sick! I filled them in on, what I plan to do in the future. It was a refreshing reminder of what good health looks like, and it looks like us! Okay, I did talk about MS a little. It was nice to get intelligent questions from friends who really want to understand, without the pity. All they seemed to see was the “me” they used to know. Sometimes, that’s enough.

How could something so outside of my comfort zone, bring me so much comfort?

COMMENTS: What have you done outside of your comfort zone this week?

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Meet me outside my comfort zone: “At the Falls”

After my Photo shoot with Abby, I am feeling quite cocky, maybe a little too cocky. I announce that I am going to Bushkill Falls, PA, by myself. To be comfortable outside of one’s comfort zone, you’ve got to go there daily. Eventually, what’s uncomfortable becomes comfortable again. That’s what I tell myself.

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I’ve been there many times, hiked the whole thing with my camera and tripod, and taken beautiful shots. So, I know full well the challenge I am about to undertake.  There is no way I can do the hike. I won’t be able to do more than walk in and make it to the first lookout. It’s not far at all from the entrance and I’ll see the first fall from there. I’m sure it is there for old people to enjoy while their family hikes on. Genius! I’ll go THERE! I’ll take my real camera and carry my tripod over my shoulder. This could be a balance catastrophe. If it comes down to me, or my camera, I’m going down!

I make the hour drive high up into the Pocono Mountains. I arrive. Note to my local friends: the flashing light where you turn left is no longer there.

I prepare to get out. Two pound camera around my neck and five pound tripod over my shoulder, and off I go.

I am worried as hell. But I… “look so good”.

High in the Poconos, stream fed waters empty into the Main Fall which is a 100 foot drop, then travels though a 75 foot long gorge and empties into the Delaware River. It’s called “The Niagara of Pennsylvania”.

Gingerly, I make it to the first lookout which is my destination. SUCCESS! But, the shots I get there are lame. It’s just the top of the Main Fall. ANTI-CLIMATIC to say the least. Did I really just lug my camera and tripod here for this?? If I go home now, this will be a TOTAL waste of time.

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I had hiked the entire two mile trail and seen all SEVEN Falls, up close and personal. But…not today. I know my limits.

BAH HUM BUG! I’m going down! Which means going down more than 100 steps (I stop counting at 80) and walking additional trail to get to the bottom of the Main Fall and the top of the Gorge?

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Now THIS is beautiful, and there are six more falls over a two mile hike. Hmmm…maybe not.

The park closes for the season in November and the foliage will be AH-mazing. That does it, I’ll be back. I’ll make it to the second Fall and go home happy.

Push yourself. Go outside of your comfort zone. You’ll discover you can recover some of the old you, or if you’re lucky, you’ll discover something even better…a new you.

Comments: What are you doing outside of your comfort zone?

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Filed under Mental Well-Being, MS and Exercise, MS and Fatigue, MS Symptoms, Riding Out a Relapse

Meet me at the Photo-shoot: Going outside of your comfort zone.

 

To be comfortable outside of one’s comfort zone, you’ve got to go there daily. Eventually, what’s uncomfortable becomes comfortable again. That’s what I tell myself.

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Abby met us at the door. She was glowing, not because it was hot, and it was, but because she is a new mom giving birth in about 4 weeks. She’s one of my “Young Barista’s”. A group of young people who have worked in my favorite cafe’ over the past few years. They had taken very good care of me in my hours there, writing. They have also at one point or another, modeled for me, and I’ve told them all, “when you have your first baby, call me. I will do a photo-shoot for you.” So, I wasn’t surprised to answer my phone and hear Abby say, “Estizer, remember when you said…”

I’ve since learned to never tell anyone what I will do in the future. This could not have come at a worse time. I haven’t taken my “real camera” out in about 2 years, and was honestly just not strong enough to do it now. But…how could I tell her, no.

I mentioned this to a dear friend, Karen T., who has helped me before on photo-shoots.  She said, “you can do it with help though, right? I’ll be your “photo-go-fer”, for a day. I was overjoyed, this meant I could tell her, YES!

The day of the shoot came, and it was extremely hot. The heat was taking it’s toll on me but, my first concern was my pregnant Mom. Did she have water? Was she in the shade? Was she relaxed? While I was watching Abby, Karen was watching me. Do you have any water? Can you come into the shade? What else do you need?

I only had to “think”, I need the camera over here and Abby over there; Karen and “Dad”were on it. In this heat, it was tough for me to think everything through. The technical stuff, F-stops and shutter speeds, filters and sunlight. Ultimately, I had to let the thinking go.The technical stuff was overwhelming. I took a deep breath, relaxed, and let my inner photographer go free. I kept an eye on my watch because I was mindful of my pregnant mom. I wanted to finish and be out the door in under two hours. 1 hour and 45 minutes…SUCCESS!

Karen and I went to dinner. I was so exhausted that I cried in the parking, lot out of sheer gratitude and overwhelming fatigue.

I can push myself through the eye of a needle, but, the cost can be quite high. In this case, so was the pay off.

Push yourself. Go outside of your comfort zone. You’ll discover you can recover some of the old you, or if you’re lucky, you’ll discover something even better…a new you.

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What takes you outside of your Comfort Zone? What things have you changed to make that happen?

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Filed under Ilness and The Arts, Mental Well-Being, MS and Exercise, MS and Fatigue, MS and Pregnancy, MS and Visualization, Riding Out a Relapse, Uncategorized

“Meet me “Under the Bridge”:Going outside your comfort zone!

To be comfortable outside of one’s comfort zone, you’ve got to go there daily. Eventually, what’s uncomfortable becomes comfortable. That’s what I tell myself.

Not doing what I used to do has been driving me up the wall. My goal is to do even more than I did before. I want a job. Not just ANY job, but a job that is outside of my comfort zone. My strategy to achieve this is, to do something outside of my comfort zone everyday! Oh yeah, I’ll do some other things too, get stronger, do my exercises, meditate, get enough sleep, drink more water, blah, blah, blah. You know the drill.

It helps that I’m pissed off because I’ve lost some things, like my camera. I haven’t actually lost it, but I’ve lost the ability to use it. My balance and strength being issues, my 20 pound camera bag, plus my tripod is just impossible. I’ve been reduced to my CELL PHONE CAMERA! Nonetheless, “getting the shot” has always made me, walk further, squat deeper, climb higher, go off the road, and…under the bridge. Push myself.

This past week my comfort zone adventures were to the Palmer Riverside Pier Park, Easton’s Wed. Farmer’s Market, Bethlehem’s Municipal Walking Park, and Veg Fest in Bethlehem, PA.

I want to wrap this up by saying, please, go outside of your comfort zone, wherever that might take you.  Whether it’s white water rafting or going to the mailbox, do it…a lot. You’ll discover you can recover some of the old you, or if you’re lucky, you’ll discover an even better, new you.

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Links of interest for services/places featured in this weeks slideshow as well as “Pintlala Creek” Under the Bridge:

Bethlehem VEG Fest,

Bethlehem Municipal Park

Easton’s Palmer Riverside Park

Easton Farmer’s Market

Last Chance Animal Rescue,

“Under the Bridge”,” Back to Lowndes County-Pintlala Creek”

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Filed under MS and Exercise, Riding Out a Relapse

Illness and The Arts: “CHICAGO”

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Lil. E.: “MOM! Did you see their butts?”

Mom: “Whose butts Honey?

Lil. E. “The guys Mom. The guys dancing!”

Mom: “Which ones Honey?”

Lil. E. “ALL OF THEM!”

CHICAGO- "The Boys"

CHICAGO- “The Boys”

These butts are the ones admired…ALL OF THEM!

We had gone into New York City to see the Broadway Musical, “Chicago”. Art, in all its forms, can be transcending. It can be used (butts or no butts) to get into your mind, and take you to another place: a place of comedy, music, drama, excitement, beauty, longing, love, peace, inspiration, and…for me, ability. It can be used to help heal. Whether it’s on line, in a book, or in person, whether it’s a play, a poem, or a painting, give it a chance.

I found myself in tears as the show ended and I didn’t know why. Lil. E. looked at me in my shame and said, “It’s okay Mom, Theater can be an emotional experience. People are just, moved.”That was comforting. I wiped my tears and looked “normal”. Then it happened.

We were outside the theater so Lil.E. could get autographs as the performers left. The last performer to leave was, Amra-Faye Wright.

Amra-Faye Wright

Amra-Faye Wright

Lil. E. had explained to me already that she, who was one of the two lead characters in the play was, FIFTY-THREE YEARS OLD! I couldn’t believe it! All of the other performers had to be HALF her age and she commanded the stage!

She is older than me (a little), and if she can do THAT, surely I can walk better! She was just the inspiration I needed. She stopped and took a picture with me and yes, I was crying. I was totally embarrassed. I imagined she thought, “What the hell?” But it really didn’t matter.

Arma-Faye Wright and I after the Broadway Musical, "CHICAGO"

Amra-Faye Wright and I after the Broadway Musical, “CHICAGO”

With art, even the artist, will not know how each person will be affected by their work. They’re role is to perform, to paint, to sculpt. Their job is to create, and put it out into the Universe so it can make a difference, whatever that might be.

 

COMMENTS: Is there a work of art that has affected you in a positive way? Anything life changing?

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Filed under Ilness and The Arts, Mental Well-Being, MS and Family, Riding Out a Relapse